Autoimmune Diseases and Fatigue

Posted by JohnWBurns @johnwburns, Jul 13, 2016

Fatigue is probably intertwined with the definition of "illness", almost any illness, but with some conditions fatigue becomes ingrained into the afflicted person's being and is a feature of their daily life. Such is the case with the highest profile disorders, cancer and cardiovascular disease, but it is just as true with at least some autoimmune diseases. I have a long history of dealing with autoimmunity and the complaint that kept bringing me back to doctors persisting in finding out what was going on was the dogged lack of energy, vitality. I got guess after guess after guess and when I got the "answer" it was basically that fatigue was part of the deal with the autoimmune disease that I have, Sjogren's, as well as I'm sure many others. So what I'm asking here is if you experience it, fatigue, how has it impacted your life and how do you deal with it? Have you found anything that you are sure mitigates it?

In my case its exercise, rest, and a fairly regulary low dose, around 50 mgs (usual recommended dose 200 mg) of modafinil, which I don't take for Sjogren's but rather for "Excessive Daytime Sleepiness" linked to Obstructive Sleep Apnea. I accidentally found out that it mitigated my general weariness. I've read some solid studies that found that American Ginseng can help cancer-related fatigue but apparently it doesn't work for Sjogren's, for me at least. Since fatigue impacts a person's total life experience in all domains, any information that might lead to dampening or controlling it would be very helpful to a lot of folks I'm sure.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

@lioness

@rivergirl That sounds like me staggering around till my ENT Dr sent me to a vestibular specialist Gave me exercises for my ears to do Took a month 2x a day but can walk straight now Did Mayo check your ears

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my shin bone on left leg is dipping inward

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@rivergirl8243

my shin bone on left leg is dipping inward

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@rivergirl8243 Have you seen a Dr about this? That shouldn't happen did you injure it somehow?

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In reply to @rivergirl8243 "no" + (show)
@rivergirl8243

@rivergirl8243 Have you always had your shin like this ? If not I would suggest you see the Dr .Will you let me know how you are I don't have enough information to really suggest anything but a Dr.

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Sounds like you may have swelling. I'd start with your PCP. Compression socks, walking, elevation, might help.

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@rivergirl8243 My guess is that your left sided weakness is causing the lower leg to turn in. Are you going back to Mayo?

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@rivergirl8243 - The reason they want you back could be that they have gone over your records again and have come up with possibilities to diagnose you.

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@woogie

Your post reminds me of me in a way. When I walk, I walk like I'm drunk. I stagger. Sometimes it looks like I'm going to fall. I had a chiropractor tell me one of my sides is ten pounds heavier than the other. He had me stand on two scales, one foot on one, the other foot on the other and stand still and shut my eyes. It sounds crazy but that's the verdict. I know I have severe spinal stenosis and sometimes I have a huge pinch in my back and that makes me walk crazy also. I am not signing up for a rod, plate, screws and a fusion. My ears have been full of wax and my ears infected this past year which I think makes your gait off also. I am sending love to all of you who are in pain--whether it is pack pain, leg pain, neck pain, people pain--God be with you.

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Have you been tested for ALS also known Lou Gehrig’s disease

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@lioness

@rivergirl8243 Have you seen your cardiologist? Or Ear Dr My balance was off but no weakness on my side I suggest you have a battery of test by your car diologist with the one side weakness

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Could you share what kind of ear exercises you did? That sounds like a nice option to try. Thanks...

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@lindalm

Could you share what kind of ear exercises you did? That sounds like a nice option to try. Thanks...

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the ENT doctor gave me instructions for the epley maneuver. You can find it online. hope this helps

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